I graduated from Rutgers in May and didn’t start graduate school until September. I spent the summer delivering pizza and preparing for school.
I was ridiculously excited for school to start.
A few weeks before school was set to begin, my family went on vacation to Aruba; one of my favorite places in the world. I remember arriving in Aruba with no worries on my mind – I felt great.
Little did I know that in less than one week, I would leave Aruba anxious, upset and uncertain about my future.
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Before I continue with this story, I need to explain something called ‘Best Disease’ – an oxymoron if I’ve ever known one.
Best Disease, also known as Vitelliform Macular Degeneration, is a genetic condition that affects the macula, a small portion of the retina that is responsible for central vision. The disease causes progressive degeneration of the macula and therefore, progressive deterioration of central vision.
I was diagnosed with Best Disease as a child and I’ve had my fair share of ups and downs. The downs are unpredictable and are characterized by an accumulation of fluid or bleeds that occur behind the retina. When this happens, I experience a dramatic loss of vision. Unfortunately, there is no cure for Best Disease, but I do receive some type of treatment, either photodynamic laser therapy or more recently injections of an Anit-VEGF drug each time that I have an “episode”. You read that right, injections into my eye… with a needle (it’s actually not as bad as it sounds).
These treatments help to restore some of my vision, but it never gets back to where it was prior to the episode. As a result, my eyesight has fluctuated over the years, being as bad as 20/280 (legally blind) and as good as 20/30. Each eye has experienced ups and downs independently of one another and luckily I’ve always had one “good eye” that helps to compensate for the other.
My poor eyesight has altered my path in life plenty of times, but I have never let it hold me back. Sure, I had to stop playing baseball, the game I love, because I couldn’t see the ball. And yea, I stopped playing football in college after taking a big hit and noticing a change in my vision. But I never planned on being a professional athlete, so while these things sucked, I dealt with it – it was ok.
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It had been a few years since my last episode and my vision had been stable for a while – my eyesight was at the back of my mind.
And just like they say, “it happens when you least expect it”.
The second day of vacation, I noticed a change in my vision. The initial change wasn’t obvious, but I’ve become so in tune with my eyes that I sensed something was wrong. Sure enough, on day three, I noticed a big change… I was losing my central vision in my right eye.
I had an active bleed behind my retina, it was getting worse and worse and I was thousands of miles away from my doctor in New York… there were still four days left on our vacation. Those four days were probably some of the toughest days of my life. I was in one of the most beautiful places in the world, yet I sat in a dark hotel room in solitude. I was dizzy, I had headaches and worst of all, I was alone with my thoughts. My fears consumed me. I couldn’t help but wonder how I could possibly manage graduate school, in a doctorate level program nonetheless, with my eyes.
My eyes that can’t read fine print.
My eyes that have trouble recognizing faces.
My eyes that give out without a moment’s notice.
We flew home and went to New York the following morning. I received an injection and all I could do was wait. I was legally blind in my right eye and there was now only a few weeks until my program began.
Those weeks were hard. I lost my confidence. I lost my drive. I lost my hope.
I couldn’t help but think…
“Is it smart to take out student loans and put myself through this program if my eyes might not even hold up for me to graduate?”
“And what if I do graduate.. at some point my eyes will give out on me… I might not even be able to drive, let alone read or work, and then what?”
I thought to myself that maybe I shouldn’t go to school. I had a bachelor’s degree in a field that I loved (B.S. Exercise Science and Applied Kinesiology) – maybe I could start working immediately as a personal trainer and save up money and get insurance for my eyes. I thought that maybe I should give up on my dream of becoming a physical therapist because it wasn’t a safe move to go into debt to get a degree that I may not even finish.
Those weeks were filled with uncertainty, self-doubt, and to be honest, self-pity. I was ready to skip school and play it safe.
I was ready to throw in the towel.
Every day I thank God that my parents talked me out of that terrible idea. My dad told me that I can’t live life always thinking of “what if.” My parents gave me the support and confidence to pursue school with no hesitations and to know that I am capable of overcoming any obstacle that might cross my path.
Since my program began almost a year ago, my eyes have held up (knock on wood). Don’t get me wrong, my eyesight is not great by any means, but over the years, I’ve learned to cope.
I want to dedicate this first blog to my parents.
Thank you for supporting me, loving me and pushing me.
This past year has taught me a lot, but my biggest take away has been that no matter what the challenge, what the obstacle, or what the set-back – when you give 110%, there’s nothing that can stop you from pursuing what you want. From one of the all time greats…
“There is no reason to have a plan B because it distracts from plan A.”
Will Smith
I’m all in on my plan A and I couldn’t be happier.
Thank you for reading – I’ll be back soon!
Joe Rinaldi
IG: @joearinaldi
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